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A Great Day for the Caregiver

Last week, I spoke to a group at our church about living with Alzheimer’s. During the Q&A, someone mentioned the stress experienced by caregivers and asked how I was dealing with that. As I said to him, “That’s a good question and one that I’ve tried to address since Kate’s diagnosis.” My thoughts about care for the caregiver is rooted in watching my father as he cared for my mother who had dementia. Except for the things I did to support him, the only help he sought out was a daycare center for my mother 4 hours every Wednesday so that he could go to Kiwanis and the grocery store. He was always in good spirits, but the stress took its toll on him. I vowed not to let that happen to me. I can’t say that I have found a way to eliminate stress, but I have been able to minimize it.

Since our move in April, life has become much easier for me. Supervising only three caregivers is much better than the 6-9 we had before the move. That has meant more routine in our lives. As expected, the convenience of meals on the premises has been a major benefit. Little things like being able to stroll down the hallway to a café where Kate can get an ice cream or a milk shake adds pleasant moments of relaxation. On top of that, I am enjoying the social interaction with other residents and staff that occurs throughout the day.

I also get away from the grounds several times a week. I attend Rotary every Monday and have lunch at two of my favorite restaurants on Wednesday and Sunday. Of course, there are also trips to the grocery store and pharmacy.

This past Wednesday was an especially nice day. I had lunch at Carla’s where I had an arugula and goat cheese salad with cherry tomatoes and pecans accompanied by a side of smoked brisket (the best I have had outside of Texas). The meals in our retirement community are quite good, but they don’t compare to the ones I get at Carla’s or Andriana’s.

Apart from the meal, I had conversations with two of the staff I have known for quite a while. One is a server who is moving to Nashville. Her boyfriend just graduated and is moving there to look for a job. She is going with him to further her education to become a physical therapist. She was excited about the move, and I was excited for her. It reminded me of the early days of our own marriage.

The conversation was with the shift manager. He is from Romania and has been in the US about five years. He is married to a Puerto Rican who is in the Air Force. Earlier this year, he became a US citizen, and was very excited about that. Now, he is excited by the news that his wife’s next assignment is in Naples, Italy. That will put them within an hour by plane to his family’s home. That will make it much easier and less expensive for his parents to visit him and his wife and daughter. When his wife finishes this assignment, she will have only three years until she can retire. Upon retirement, they plan to return to the US. I found both of these conversations to be uplifting and was happy for them.

Wednesday is also “Spa Day” for Kate. The caregiver bathes her, shampoos her hair, applies lotion to her body, and does her nails. When I got back to the apartment, I was pleased to see Kate with eyes closed relaxing in her recliner while the caregiver filed her nails. Until two years ago, I had been taking her to have her nails done once or twice a month. As her Alzheimer’s progressed, she became somewhat frightened, and I stopped. This particular caregiver has been doing her nails since she came to us in December or January. It does my heart good to see Kate enjoy herself so much.

To top it off, we made our trip down the hall for ice cream. I didn’t need anything more to keep my spirits up.

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“Happy Moments” Make for “Happy Days”

Almost all of our “Happy Moments” are unplanned. That’s part of what makes them special. One of those occurred the other morning when I was giving Kate her meds in a cup of strawberry and banana yogurt, a favorite of hers. After her last bite, she began to whistle. (She’s hasn’t been a whistler until the past 6-12 months when she began whistling to express her happiness.)

One of my many quirks is that I often hum, whistle, or sing softly without being quite aware of doing so. In this case, I began to whistle “Let Me Call You Sweetheart.” She expressed her pleasure with a smile. It doesn’t take much encouragement for me to break into song, and I sang the song to her. Spurred on by her pleasure, I whistled “Old Man River” and followed by singing it.

She was enjoying the music so much that I put on an album of children’s songs I downloaded 3-4 years ago when she was disturbed about something. Since that time, I have periodically used it for entertainment, not to solve a problem. We spent the next 20-30 minutes listening and sometimes singing songs like the “Alphabet Song,” “If You’re Happy,” and “The Bear Went Over the Mountain.”

When we finished, Kate was ready to rest, but it was another unanticipated “Happy Moment” that didn’t require any planning or great musical talent. Just two people connecting through music that added an extra measure of happiness to our day.

Some might say, “What’s so special about that?” John Zeisel answers that in his book, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s. He points out that too often we treat people living with dementia like “patients” rather than as “people.” We need to accept and appreciate their capabilities that last long after the diagnosis. It’s possible to maintain positive relationships with our loved ones with dementia through many things like photos and music that have been very important to Kate and me. This particular “Happy Moment” illustrates how we are able to continue to enjoy life and each other. May it always be so.

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On a 1-10 Scale, Wednesday was an 11.

Just over two weeks ago, Kate and I celebrated our 58th wedding anniversary. That morning I wrote a post saying the day before she gave me the perfect present. She was  in a cheerful mood all day. I commented that if she wasn’t the same way on our anniversary day, it was just fine. She had given me enough to keep me going for a while.

I bring this up because yesterday was my 81st birthday, and the day before that was even better than the day before our anniversary. My feelings were the same. Although I would have loved it, she didn’t need to be as upbeat as she was on Wednesday to make me happy. Experiencing the pleasure of her joyfulness will last a long time, and Adrienne, our caregiver, got as much pleasure out of it as I did.

She was just waking when Adrienne arrived at noon that day. I left soon after for my usual Wednesday lunch. When I returned, she was in her recliner. Adrienne said that she had been happy and cooperative when she got her dressed and out of bed.

An hour later, we took her for a stroll around the interior of the campus. We went to the wellness center and met three of the staff. Then we toured the chapel. Along the way we saw a number of people who hadn’t met Kate. I was glad for them to meet her and for Kate to have the experience of getting out and engaging in normal activities. She was enthusiastic about going out and continued to be expressive throughout out our tour.

When we returned, we went to the balcony where we relaxed about forty-five minutes before dinner. It was a very pleasant afternoon, and we went back to the balcony for almost an hour after eating.

She was very cooperative as we got her into and out of the lift as well as when we got her ready for bed. It was her best day in many months. Everything seemed to go right, and that is something to treasure.

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Settling In Part 1: In-Home Care

Eight weeks ago, Kate and I moved into our new home in a local retirement community. Over the weekend, I met a couple who moved in two months before we did. He told me what a big change it had been after living in their home over forty years in the same town in which they had grown up. I could relate to what he must have felt. All my established routines were disrupted, and I’ve been working to establish new ones.

I’m happy to report that we’re making progress.  Over the past two weeks, I’ve felt much more settled. That relates to three aspects of our lives that have improved significantly. In this post, I’ll tell you about Kate’s In-Home Care and follow that with posts about Kate herself and then me.

Prior to Kate’s hospitalization with COVID eight days before Thanksgiving, we had help from caregivers three afternoons a week, Monday, Wednesday, and Friday, four hours for each day. We maintained that schedule for three years. We were fortunate that the caregiver who came on two days a week was with us the entire time. We had 3 or 4 for the remaining day. During this time, the demands on the caregivers were minor. I just needed someone to be with Kate while I was gone. They didn’t have to be in charge of any of her personal needs.

We were approaching the time she would require more care when she and I tested positive for COVID. Before she entered the hospital, I arranged for 8-hour daily care for her. Our regular agency was unable to fill the schedule. That led to my adding a second agency that provided help the four days not already served by the first agency. I’m grateful for their coming to my aid on such short notice, and I thought all of the caregivers were able to perform the needed tasks. Unlike our original agency, however, they never provided the consistency that I wanted. During the 5 months prior to our move, they sent us 6-8 different caregivers. They were all competent, but it was impossible for Kate to develop a comfortable relationship with them.

Our move required some adjustment. Our retirement community has its own home-care agency (Caring Hearts), but they do allow caregivers from other agencies to work here. There were two catches. The first is outside caregivers have to complete the same requirements as their own employees. That involves background checks, an all-day orientation, and health requirements. In addition, there was a $320 charge to me for each caregiver. As it turned out, only two caregivers chose to go through the process, one from each of the other two agencies.

The best news is that one of our caregivers, Adrienne, was already employed by Caring Hearts as well as the agency we had worked with for three years. She is also our best caregiver. As a result, it worked for her to cover 10 out of every 14 days. She gets every other weekend off as well as every Friday. The caregiver who has been with us over 3 ½ years continues to come on Fridays, and Caring Hearts is providing a new person for the weekend Adrienne is not with us.

These changes have had two major effects. First, our daily routine is decidedly more consistent. Adrienne shares some of my OCD tendencies and has a steady routine. Second, It gives Kate a chance to develop a closer relationship with her.  She has 3 different caregivers rather than 6-8. Only one of them is new. She is young (19) and has limited experience, but she is a certified nursing assistant (CNA) and is in school to become a nurse and then a physicians assistant. I’m optimistic about her.

I am especially pleased with the daily routine. When Adrienne is here, I feel more comfortable about leaving and regularly leave for lunch on Wednesday and Sunday very shortly after she arrives. She is the only caregiver that gets Kate up and dressed without any help from me; however, I have been helping her when we take Kate to the balcony or outside the apartment. I also help her get Kate ready for bed.

Apart from her routine, I like other things that she initiates on her own. For example, she has designated Wednesdays as “Spa Day” for Kate. On that day, she does Kate’s nails. She also takes more time getting Kate up each day. She works very slowly bathing, changing, and dressing her. She’s very good about making sure Kate gets her fluids, something I have found most of our past caregivers haven’t made a priority. I almost forgot to say that Adrienne always fixes a nice breakfast/lunch for Kate every time she is here. She is French and make French toast, French omelets, and fruit. On top of these things, she doesn’t ask if there is anything she can do for me. She just does the things that need to be done. She regularly takes care of washing and drying clothes, taking out the trash and recycling, organizing, and letting me know when we need new supplies.

This change in care has had a noticeable impact on both Kate and me. I’ll say more about that in my following posts. At the moment, I’m just glad that our in-home care is working well, and that makes life better for both of us.

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Our Relationship

First, let me say that Kate had been in a good mood all day. Second, nothing in my caregiver’s toolbox works every time. On the other hand, Kate and I still work well together most of the time. Here’s an example from last night.

Kate was awake very early yesterday, just before 8:00. In fact, in the past few days, she has been awake as early as 7:00. It’s not unusual for her to do this occasionally, but she typically goes back to sleep. Not so, this time, and I took advantage of the opportunity of being together. I got the photo book I made for our recent anniversary and jumped into bed with her. We spent a good while going through it together. This was a time when she was interested. We enjoyed reminiscing about all the things we have done together. We only stopped when she began to tire. Then she rested until the caregiver arrived.

The afternoon also went well. Kate, the caregiver, and I spent over an hour relaxing on our balcony. That’s becoming a regular part of our daily routine at least until the summer heat makes it less appealing.

Although she is adjusting to our getting her out of and back into bed as well as changing her, Kate continues to protest, at least a little, most of the time.  That was true when we got her into bed after dinner. As the caregiver started to pull her slacks down, Kate responded forcefully both verbally and physically.

I responded by getting into the bed from my side. She was holding tightly to the caregiver’s arm with one hand and her pants with the other. I spoke slowly and softly and asked her to take my hands. She didn’t release her grip. As carefully as we could, the caregiver and I took her hands and put them in mine.

Then I said something like this. “Sweetheart, it’s about time for Lilly to go, and before she does, she needs to get you ready for bed. She needs our help. I know you would like to help her.” She said she did. I continued, “What we can do is just relax and let her do what she needs to do. She’ll be very gentle. She knows how to do this. I know this isn’t easy for you, but I am right here with you. You can hold my hands and squeeze them as tight as you want.”

She began to relax. Lilly did what she needed to do, Kate never protested. The two of us talked about how much we appreciated having someone to help us. When she was ready for bed, she said, “Thank you” (to Lilly). A potential problem had been averted.

This recovery wasn’t a singular event. It grows out of our longtime relationship and individual personalities. We are both conflict avoiders, and each of us likes to please the other. That has carried us a long way in our marriage, but I never imagined that it could pay such benefits in the last stage of her Alzheimer’s. Will it last forever? Obviously, I hope so, but I can’t even be sure it will happen the next time we encounter a similar situation. Still, I’m optimistic that the nature of our relationship will continue to help us face future challenges as they arise, and I know they will.

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Accepting Each Day As It Comes

“It’s a day to celebrate although I don’t know what lies ahead.” That’s a quote from my previous post in which I talked about our 58th anniversary and that Kate had given me the perfect gift the day before. As it turned out, the actual anniversary wasn’t exactly the way I would have liked although it ended well.

Unlike the day before, she slept late and wasn’t in a particularly good mood when she awoke. I decided not to wait until later to give her the anniversary card and photo book I had prepared. She is almost always more cheerful in the afternoon.

In my eagerness, I didn’t wait long enough. When I told her it was our anniversary and read her card, she didn’t show any emotion at all. It seemed like she knew I wanted her to be excited, and she was going to show me I couldn’t do it. I gave her the photo book with 95 pages of pictures of people and places that had been special to us the past 58 years. It was clear after showing her the cover and first couple of photos that I was facing a losing battle. I made a wise decision to try again later.

The opportunity came as we ate dinner. She enjoyed her food, and she became more cheerful. When she finished her ice cream, the caregiver went to the bedroom to get things ready for the night. I picked up the photo book and showed it to her. She took to it right away. It was too much to go through all of it, but she liked what she saw. She was cheerful and loving for the rest of the night.

Yesterday was a very good day. For the third time since we moved six weeks ago, the caregiver and I took her out of the apartment. For the second time, we walked through the park across from our building. We followed that by relaxing on our balcony until time for dinner. She enjoyed the day.

Of course, I would have liked the day of our anniversary to have been like the day before and the day after, but I had little or no control over that. By this time, however, I’ve learned the value of accepting each day as it comes. That doesn’t mean I simply give up and let it go. I always try to make things better. Sometimes I succeed; sometimes I don’t. I try not to push her. That only makes things worse. If I just back away for a little while, she often comes around naturally. One thing is sure. I know that the bumps in the road are going to occur, and I am encouraged with the knowledge that we’re also going to have more “Happy Moments.” I wonder what’s in store for today.

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The Role of Love in Caregiving

In my previous post, I used an experience in a support group as a springboard to talk about the value of partnering with the person receiving care. In that same group, the facilitator asked us how often we tell our care receivers we love them. Although time ran out before we could fully address the question, I thought it also plays an important role in caregiving, especially in a strong partnership with a family member.

By itself, partnering can be interpreted as a mechanical agreement to work together without any special emotional attachment. Caregiving, for example, can involve many skills that can be taught or learned through previous experiences. I’ve observed that with all of Kate’s caregivers past and present. They’ve completed training to receive their professional credentials and almost all of them have had more than ten years of work experience. Their knowledge of how to perform many aspects of caregiving far exceeds what I know, but there is much more to caregiving than knowing how to perform the basic skills. The best caregivers are able to develop an emotional connection with those receiving their care.

Despite that, I think that the expression of love is something most likely to be found among close relatives. I am thinking especially of spouses and children of people living with dementia. Therein lies a valuable asset that paid caregivers may not normally possess or come by easily. I should be quick to say that even close family members sometimes find that love can weaken with the challenges they face.

I have to admit that I am heavily influenced by my personal experience with Kate who has the very best of care from her medical professionals and paid caregivers; however, I think they don’t communicate “I love you,” “You matter to me,” and “You’re someone special.” Those expressions of love come from me, and I believe they are very important in reinforcing the strength of our relationship as well as Kate’s sense of self-worth.

This should not be a surprising observation. After all, when two people fall in love, each recognizes a sense of love that is different than the love we have for other people. I’m not suggesting that love cannot be equally strong for a parent, sibling, or other family member though I believe the intensity of this emotion is generally different than that of the love for a spouse.

I suspect there are family caregivers who feel at a loss to provide care for their loved ones, but so long as love lasts, they possess an asset that few paid professionals can achieve. Coupling that with the skills of professionals makes for a winning combination.

Let me close by returning to the question asked by our support group’s facilitator: How often do you tell your spouse you love them? My answer is quite often. I begin each day by telling Kate how glad I am to see her. When she is smiling, I tell her how much I like her smile and that she has her mother’s smile. I bend my head close to hers and look straight in her eyes and tell her I love her and that she is the most special person to me in the whole world. I don’t bombard her with all this in “one shot,” but I do so in a relatively short period of time.

At various points during the day, I remind her of my love for her. When I turn out the lights at night, I move close to her in bed and thank her for a nice day. Then I say, “Every day is a special day when I am with you. I love you.” I can’t say that I was anywhere near as expressive of my love for her before Alzheimer’s, but, especially at this point, I believe it is important for her to know that she is loved. She is unlikely to pick that up from anyone else except from our children whose opportunities are limited by the fact that they live out of state.

Until this very moment, I hadn’t thought about my “Caregiver’s Toolbox,” something I’ve mentioned in other posts, but it seems to me that expressions of love from one family member to another is, perhaps, the most valuable tool of all. I know it’s the one I use most. It pays great dividends.

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Partnering

Last week I attended (virtually) a local support group. A new person from Los Angeles also joined us virtually. He’s caring for his father who doesn’t want to take a shower and wondered if any of us had encountered a similar experience. He was eager for any ideas that might help him solve his problem. The first thing I thought of was that caring for a parent presents a different and, perhaps, a greater challenge than when caring for a spouse.

It made me think about how important partnering with Kate had been in our relationship. The first two weeks after her diagnosis we talked a lot about how we wanted to respond. I don’t recall that we mentioned the topic of partnering. We simply tried to lay out a general way that, together, “We” could approach “Living with Alzheimer’s.”

We were already partners and were sensitive to our shared desire to make the most of whatever time remained to us. As time passed, it was clear that her Alzheimer’s made it impossible for her to carry out any plans. It was up to me as her caregiver to do that; however, I’ve always been mindful to treat her as a full partner. That has never been truer than during the six months since her return from the hospital.

On a daily basis, her paid caregivers and I have to do things that she doesn’t like for us to do. The role I play in this process is to put her at ease and comfort her. I often remind her that we need to help the caregiver. I explain that the best thing she can do is to remain calm and let the caregiver do her work. The caregiver and I both compliment and thank her for her cooperation. We do these things every day and every time. I am happy to report that she has made gradual progress. Even in the past week or so, she has been more cooperative than she has been for months.

Is this because she considers herself a partner in our effort to care for her? I can’t imagine that she does. I do believe that she is growing more accustomed to being moved about, changed, and lifted in and out of bed, her recliner, and her wheelchair, but I don’t believe that completely explains the difference. I think the way the caregivers and I have approached her has also played an important role in reducing her fear or irritation.

Let’s return to the shower issue of our friend in Los Angeles. His father is a retired naval officer. His role as a parent and his career have involved being in charge. It can be hard to give that up to one’s child even though they have reached full maturity and have children of their own. I imagine it is especially difficult for this man’s father.

This man wanted an idea he could use to get his father to shower. Developing a partner relationship requires time. You don’t just say let’s be partners and discover the other person becomes cooperative. I’m not suggesting that establishing a strong partnership with his father is unrealistic. I’m saying it is unlikely to happen overnight. It has to be cultivated. The father is still reasonably early in his dementia. Working out a partnership with his father could pay great dividends in the future. That is where I think caring for a spouse can be an advantage over caring for a parent. I emphasize “can be.” There are lots of marriages that are not ideal partnerships. There are also good marriages in which one person is more dominant than the other. Fortunately, Kate and I had a good working partnership before her diagnosis and have worked to continue that since then. It’s another of the advantages we have had while “Living with Alzheimer’s.”

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An Important Breakthrough

Kate has not been outside since two weeks before Thanksgiving. There have been several exceptions. Four or five times we spent an hour or so on the patio before our move. Another was the ride in a wheelchair van when we moved, and since the move, four times on our balcony. That ended yesterday when her caregiver and I took her for a walk in her wheelchair around our building and the one adjacent to ours.

It started when I mentioned to the caregiver that I would like to arrange for Kate to have her hair done. I’ve talked with her hair dresser and the person who manages the salon on the grounds but have been concerned about how Kate might react. Yesterday, her caregiver suggested that we gradually take her outside the apartment and around the building. I agreed.

It wasn’t long before I saw that the caregiver was getting Kate out of bed and assumed that as usual she was either going to bring her to the living room or to our balcony overlooking a courtyard located between the two long arms of our U-shaped building. When I said something about going to the balcony, the caregiver said she wanted to take her outside our apartment. I was pleased with her desire and offered to go with them.

Kate was very quiet and didn’t protest as we walked into the hallway toward the elevator. We were encouraged but wondered how she would react to the elevator. As we approached, our next-door neighbor got off and walked toward us to her apartment. This was the first time any of the residents had seen Kate, and I took the opportunity to introduce her. I told Kate her name and explained that she lived next door. Kate didn’t say a word.

Then we proceeded to the elevator, backing her in because that seems to be less frightening for Kate. We entered without Kate’s protesting. The next step was the closing of the door and the motion of the elevator’s going down. Kate was very calm.

Once downstairs, we ran into the “Move-in coordinator.” She is the person we newcomers look to first when we have a question or problem. We walked over to her, and I introduced Kate to her. As with the previous introduction, Kate didn’t say a word, but she didn’t appear to be disturbed in any way.

From there, we went outside to the courtyard and walked around the outer walkway. Kate expressed neither concern nor pleasure. Her caregiver and I were encouraged that she seemed comfortable. I commented on the assisted living building that is located at the open end of our building. The caregiver offered to give us a tour.

As we entered, I took note of the fact that one of the first things I saw was the office of the geriatric physician whom I have known since the late 90s. A few months ago, Kate’s current doctor had mentioned that it might be good for Kate to transfer to this practice. I definitely plan to do this but also like her current doctor and haven’t been in a hurry to make the change. I knew it would be convenient, but seeing just how close it is to our apartment heightened my interest. I plan to bring up the subject of a change at our next appointment with the current doctor.

After walking through the assisted living facility, we walked back to our building and took a seat at an outdoor table at the soup, salad, and sandwich bar on the ground floor of our building. We relaxed about thirty minutes. Kate was quiet but did say that she liked being outside when I asked.

A few minutes later, she asked, “When are we going back up?” You might not think there is anything remarkable about this, but her caregiver and I did. She never seems to say anything that conveys awareness of where she is or the location’s relationship to some other place. The notable exception would be the many times she has said, “I want to go home.” (By the way, I’m not sure she has said that at all since we moved four weeks ago today.) The fact that she used the word “up” was striking to us. Was this just a random use of the word, or did she realize that we were downstairs? I’m inclined to believe the latter. If I am right, it shows a greater sense of awareness than I thought possible at this point in her Alzheimer’s.

It was just after 4:30, and I usually order dinner around 5:00, so we made our way back to the apartment and without any complications. Her caregiver and I hope that this is just a first of many such experiences in the days ahead. Kate may not have expressed any great enthusiasm, but her caregiver and I did. It was a refreshing outing for both of us.

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Update on Kate’s Reflux

A few minutes ago, I read a column in the New York Times that focused on the changing views of COVID-19 by the scientific community from the beginning of the pandemic to the present time. Although the time frame is so much shorter, I could relate to my own thoughts about Kate’s recent coughing episodes reported below. The story took an unanticipated turn yesterday. Having read the Times article, I feel a little more cautious about any conclusions I now hold. With that in mind, let me tell you more.

When I finished the previous post, I was reasonably comfortable that Kate’s problem was reflux and not an issue with her heart. During the night, she coughed two or three times with an accompanying yell of discomfort. The next morning (yesterday) I was not so comfortable. I realized that the medication needs a little time to work, but I began to feel that her symptoms were more like a sharp pain than that associated with reflux. I intended to call her doctor again, but her nurse called me first. I discovered that I was supposed to have given Kate Mylanta as well as omeprazole. As soon as the caregiver arrived, I went to the pharmacy to get it. I gave her three doses between then and the time she went to bed. The doctor said that if this didn’t stop the episodes, she doubted Kate was experiencing reflux. It could be a cardiac issue, and we should go to the hospital.

She had only three episodes after the first dose of Mylanta. The first one occurred almost immediately after the first dose. That could have been related to a swallowing issue and not reflux. Only one of the other two was like the episodes that concerned me. I was hopeful that she would have a good night, and she did. She coughed three times over a couple of minutes, but it was not the kind of cough she had had before. It was more like clearing her throat, something that is common for her. She showed no signs of pain although she said, “That hurt.” following one of the coughs. It sounds like the Mylanta may have taken affect. I’ll give her omeprazole and another dose of Mylanta as soon as she wakes.

Once again, it looks like “All’s Well That Ends Well” is an appropriate title for this story. I  hope to corroborate this conclusion in another post.